epilepsy symptoms, fluorescent lights, living with temporal lobe epilepsy, living with TLE, migraines, seizure triggers, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, what is temporal lobe epilepsy, what is TLE
This last week I embarked on a journey of sorts to fix, once and for all, the problem I have with light. That sounds like such a tall order, and it is probably unrealistic to expect to find a quick solution. But I wanted this solved and as so often happens when I set out to solve a problem, it usually gets bigger, more complicated and more convoluted. My problems with light are no exception.
“If you drink much from a bottle marked ‘poison’ it is certain to disagree with you sooner or later.”
― Lewis Carroll
In the beginning, as a five-year-old-child, I had terrible headaches. I didn’t know I had headaches exactly, I just knew that I was feeling bad when others were feeling good. I also noticed that direct sunlight made things worse. My grandmother used to call me a “a child of gloom” because I loved cloudy or rainy days. I also loved to swim and, oddly enough, found that under the water the harsh South Arkansas sunlight was filtered and softened in a way that always comforted me.
My grandparents took me on a cross-country car trip when I was twelve. All I remember about Arizona was pain. Some thirty-five years later, traveling on business, I felt the same way.
Migraines became my way of life. I tried everything to stop them. At one point, a doctor prescribed belladonna, a potent poison, and even that didn’t work. I was unable to respond to any drug that helped migraines. In time, my doctors moved on to narcotics to treat the pain and I found out quickly that this was a bad idea.
Finally, after a two-month period of continual pain, my doctor suggested Botox injections and washed her hands of me, my frantic calls, and my unsolvable medication problem. At the time, Botox was new to migraine prevention. I got a good doctor who actually knew something about the face and had experience with the medication so I wouldn’t look like a stroke victim.
In the 15 years that I have been going to her for the shots I have done a number of experiments with positioning, learning my own lessons about what works and what makes them worse. Overall, I have been very relieved. Relieved of pain.
There is, however, one issue with the shots that I learned the hard way. Botox stops the migraine pain at the point of injection, but it doesn’t stop all the other associated issues. For example, with me, it won’t stop the nausea or the aura. It’s as if the migraine is going on, but you just can’t feel it, so everything that would happen with the migraine is still there.
All of this is old information. Old and taken for granted. So I was surprised when it became relevant again last week.
When the epilepsy broke through in 2005, one of the more extreme symptoms was an inability to tolerate fluorescent light, TV movement, computer screens, etc. I am not even going to talk about video games, movies in a theater, or nightclubs.
Of all the light-related issues, the fluorescent lights are the most serious. A five-minute stay in Hobby Lobby had me moving with a limp, running from my husband in confusion, and suffering a partial seizure. More than once I am a bit ashamed to say, since I like their wrapping paper.
Grocery stores, pharmacies, fast food restaurants, schools, church halls, and retail stores are all out. My husband has to shop for groceries alone each week. I have become dependent on Amazon for things like vitamins, reading materials, art supplies, and birthday gifts. Any trip to the doctor, the optometrist or the dentist will result in seizures unless I take my rescue medication beforehand, and then I’ll suffer later from the effects of the medication.
I assumed that since I had epilepsy AND I was photosensitive that the two conditions were connected. It seemed logical since my light sensitivity got worse after the temporal lobe epilepsy broke through.
So, this week I decided I would solve the problem. It began with my optometrist. He claimed that grey lenses would do the trick, that for years people used them for this purpose until they fell out of fashion or favor. He’s been doing this for many years, so I believed him.
Next, I looked at research from the National Institutes of Health. A paper there listed blue as the best color having beat out grey, amber and brown. That made sense to me since I had brown/amber lenses specifically for fluorescent light problems and they did not protect me.
Onto other research from Utah that said pink or rose colored lenses work best.
Anecdotal information claimed brown worked better.
I literally spent the better part of two days going from one link to another trying to determine what color I should use. During this process, I ordered some fit-overs in grey/blue to help until I could have prescription lenses ground in the color I thought I needed. I thought blue might work since amber didn’t seem to be doing it.
The grey/blue fit-overs worked moderately well. I experienced problems in only one out of three places with fluorescent lights, which afforded me a good measure of freedom. So, I thought I would select the blue color, given my moderate success.
But no, my daughter argued. A pair of glasses would cover about half of my vision field unprotected. She wanted me to stick with the fit-overs that definitely covered almost all of my field of vision. The problem there was that I thought I looked like a bug. I received a withering look when I mentioned it. (I thought of the Rolling Stones song that says “you can’t always get what you want, but if you try sometimes, well ,you might find you get what you need.”)
OK! Blue fit-overs. Then came the next problem.
During all the research on colors and seizures related to light and so forth, I came across a type of migraine called a Hemiplegic Migraine, a migraine that paralyses one side of the body, causing a temporary weakness. It may affect the face, an arm, or a leg. And, it may bring with it numbness or that “pins and needles” feeling.
Along with the physical effects, the hemiplegic migraine causes symptoms similar to those of a stroke, such as speech difficulties, vision problems, or confusion. Doctors say these symptoms usually go away after about 24 hours, but can last as long as several days.
I was stunned. This sounded a lot like what I thought was an aura preceding a seizure. I suffered greatly from these symptoms to the extent that I even had right-sided nerve damage in my arm and leg detected by an EMG. At the time the neurologist asked me what had caused the damage. I remember looking at her thinking “aren’t you supposed to know the answer to that one?”
The nerve damage, my substantial history of migraines, my symptoms of weakness, pain, pins and needles, and a fever-like feeling that lasted for hours had gone unidentified with all five of the neurologists who had treated me from the beginning.
So what was happening here? Was I having these Hemiplegic migraines but not aware of them because of the Botox? If that was the case, were these migraines eventually pushing my body into a seizure each time? Was I having a seizure that was the result of the migraine activity and not the epilepsy? Were all the symptoms the result of the epilepsy? Were my migraines just the garden-variety?
Was I a hypochondriac? Or, did I just find an important piece of my personal puzzle?
As usual, I don’t know the answers to any of these questions. I only know that the blue/grey lenses are working for me. For now, at least.